HopeSprings Posted January 9, 2013 Report Share Posted January 9, 2013 I'm sorry Bren. Hope you'll be able to taper with no ill effects. Have to say I'm not surprised and it was one of my fears/ suspicions with Florinef even though they said oh, nooo it's not that kind of steroid. This is the problem - it seems there are few medications for POTS that can be taken long term without facing potential problems down the road. !! Quote Link to comment Share on other sites More sharing options...
brethor9 Posted January 9, 2013 Report Share Posted January 9, 2013 Thanks Naomi yeah to be honest I have always been weary of taking it too.....I mean really how can doctors really know how a drug is going to affect you long term? and every patient is so different right? when I first started it my sister (she was a nurse for 20 yrs and now a drug researcher) warned me that ANY type of steroid is not good to be on for long term but honestly I was soooo sick at the time it was worth it! I am still not sure if I will be able to do without it....guess I will have to wait and see Quote Link to comment Share on other sites More sharing options...
HopeSprings Posted January 9, 2013 Report Share Posted January 9, 2013 True, Bren - it's all about weighing risk/benefit. If it gives quality back to your life then I understand taking a chance! Quote Link to comment Share on other sites More sharing options...
brethor9 Posted January 10, 2013 Report Share Posted January 10, 2013 Thanks Naomi it would just be nice if we could ever find something to really help without side effects and not just be a band aid Bren Quote Link to comment Share on other sites More sharing options...
AllAboutPeace Posted January 10, 2013 Report Share Posted January 10, 2013 Thanks Naomi it would just be nice if we could ever find something to really help without side effects and not just be a band aid BrenTotally agree!!! It really can be a double edge sword. I researched Florinef endlessly before agreeing to take it - and, of course, having no idea whether it would have any positive effects at all.I recently was asked the question: What was the best thing/moment in 2012? Without even blinking, I answered that it was being able to take my son for ice cream - just the two of us. (We kept it to the drive-thru, so there was no unneccessary standing) After 10 months of being housebound with little to no improvement and all of the nasty symptoms we go through daily, four full weeks of Florinef gave me back my ability to drive and feel like I could do some 'Mom' things again. It definitely didn't fix what is broken, but, Naomi and Bren, as you touched on, it meant everything to me in terms of quality of life.Bren, let us know how your ultrasound goes. Quote Link to comment Share on other sites More sharing options...
brethor9 Posted January 10, 2013 Report Share Posted January 10, 2013 I hear ya Peace It gave me back some of my life too but now it seems to be going in the other direction I am so glad you are getting some good effects....you almost made me cry reading about taking your son for ice cream seems like such a silly little thing but for us it is such a milestone! I will keep you posted thanks for the support! Thank god for the people on this forum......life would be so much more miserable without it!Bren Quote Link to comment Share on other sites More sharing options...
Guest Alex Posted January 10, 2013 Report Share Posted January 10, 2013 Hi Bren,i was reading this thread and it made me stop and think, as i had a bunch of issues with florinef as well - my main one being transient episodes of hypertension. I started at 0.2 mg of florinef and now i'm down to 0.05 mg a day and ever since i decreased my intake things are a lot better BP wise. Also, my 24/7 headaches are gone.If I'm reading your signature line correctly you are taking 5 times as much florinef as i am, maybe you should discuss a dose adjustment with your specialist (i don't know why I was under the impression that the highest amount of florinef a dr might prescribe is 0.2 mg a day, I guess i got that wrong since obviously you are taking more).Please let us know how the ultrasound goes.Blessings,Alex Quote Link to comment Share on other sites More sharing options...
brethor9 Posted January 10, 2013 Report Share Posted January 10, 2013 sorry Alex lol! yep that's supposed to be 0.025mg (forgot my other zero!) basically a 1/4 tablet thanks for letting me know that so I can correct it......yeah so that's why I was so shocked to find out the pre-Cushings was florinef related because it is such a small dose. My internist is also an Oncologist so he is very familiar with steroids and he says its the build up over time that is the problem.....not so much the dose ;( ..... so the ultrasound showed a build up fatty tissue (nothing sinister thankfully but he said it is definately caused by the steroid and it will get worse if I don't taper down ...... yay! one more issue to deal with now Quote Link to comment Share on other sites More sharing options...
Guest Alex Posted January 11, 2013 Report Share Posted January 11, 2013 Wow Bren,I didn't realize that was a typo in your sig line. Now I feel silly - sorry about that... and I'm even more worried, as I've been taking a lot more florinef than you and I never really liked it. Not to mention that I'm not sure if it ever helped me. I know for a fact that at a certain point it actually did more harm than good. Such a little pill, in your case 1/4 of a pill can actually cause so much trouble.How long have you been taking florinef for? (I'm sure you've already mentioned that in one of your posts but I wouldn't know where to look).Hopefully your dr will help you with a tapering plan. I know steroids (regardless of their nature) can't be stopped abruptly - even if you're on such a small dose. Has the florinef help improve your POTS symptoms at all? I read that licorice can be successfully used instead of florinef - with the same benefits but none of the side effects of a steroid - it may be something for you to discuss with your dr?! So sorry that you have one more thing to worry about, as if POTS itself is not enough. At least you "caught" the problem and you can take some steps towards fixing things.Take care,Alex Quote Link to comment Share on other sites More sharing options...
brethor9 Posted January 11, 2013 Report Share Posted January 11, 2013 Hey Alex the florinef has been helping but I am wondering if all of this is a sign that my body just can't process it any more whether I want it or not and for whatever reason. I find that is the biggest problem with meds....they help for awhile and then they turn against you I have been taking florinef for 2 years but just started having major issues in the last month or so (it just came on sudden....weird) the doc has me trying every other day to start tapering but believe it or not I feel it on the days I don't dose. I dont think my body likes the up and down. So the only other option I have is to see if I can get it compounded into a liquid and start a taper that way. I don't think you need to worry but now you know to keep an eye on it at least if things start to go weird...or weirder..lol!Thanks for reminding me about the licorice root.....I am definately going to look into that!......I am just not sure what type etc...and is it safe with MCAS? Do you know of any brands???...... Oh the drama! >>>>Again, I am not saying this to scare anyone who is currently taking florinef, most people are probably fine with it and may not have these symptoms but I thought it was important for people to know that there is the potential of these side effects when taking any form of steroid over a long time frame or in high doses.>>>> Knowledge is power Bren Quote Link to comment Share on other sites More sharing options...
Angelaintexas Posted January 12, 2013 Report Share Posted January 12, 2013 It gave me HORRIBLE headaches! Better yet one constant headache that lasted from about 4 days into it for 2 weeks straight and ended about 2-3 days after I stopped it. Stopped it for a month, then tried weaning on slower... And headaches again!!! -But some people LOVE it and it has helped others a lot. So be open minded -maybe you won't be the one who aims weight or gets headachs - you could be the one that it treats perfectly without any negative side effects ) Quote Link to comment Share on other sites More sharing options...
LMG Posted January 15, 2013 Report Share Posted January 15, 2013 I am getting increased headaches and not sure it is from florinef but have thought of licorice. After researching it, I ordered Allergy Research Group. It is a gooey, molasses type consistency and has 1.5 grams of licorice per 1/4 teaspoon. I have not taken the plunge to try it...it too can cause headaches, and potassium loss (and of course Hypotension which is not a problem for some). Biggest concern is what dose, etc compared to a drug. Licorce cannot be deglycirrizhed or you will lose the aldosterone type effects. Good luck, and keep us posted if you go the compounding route for florinef. I am interested in that too. Quote Link to comment Share on other sites More sharing options...
Guest Alex Posted January 15, 2013 Report Share Posted January 15, 2013 Bren,I don't know what brands to suggest as I haven't started looking into that yet.Also, I have no idea if it's safe with MCAS. You might want to ask people with MCAS or your dr, they might be of more help.Please keep us posted if you figure something out.Angela,ditto to the headaches, they're gone now that I'm only taking .05 mg a day, but boy were they bad at .2 mgHugs,Alex Quote Link to comment Share on other sites More sharing options...
Guest Alex Posted January 15, 2013 Report Share Posted January 15, 2013 Bren,I don't know what brands to suggest as I haven't started looking into that yet. Sorry .Also, I have no idea if it's safe with MCAS. You might want to ask people with MCAS or your dr, they might be of more help.Please keep us posted if you figure something out.Angela,ditto to the headaches, they're gone now that I'm only taking .05 mg a day, but boy were they bad at .2 mgHugs,Alex Quote Link to comment Share on other sites More sharing options...
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